A fight for life: Local woman battles disease

October 18, 2012

MARTINSBURG Alli Rogers is 24, loves animals, cooking and movies - all fairly typical traits for her age. What is not typical is that every day Rogers fights for her life.

Four years ago, Rogers was diagnosed with an extremely rare disease known as Lymphangiomatosis. One of the biggest problems: It is not really known to anyone. Her doctor, in Salisbury, Md., told that that in his 30 years of practice, he has never seen this disease.

"I have fluid that fills up in the cavity between my lung and chest wall, and I can't breathe. I can't breathe because my lung is collapsing under the press of the fluid," Rogers said, adding that her disease is one that causes a congenital abnormality of the lymphatic system for which there is not standard treatment or cure.

Article Photos

Submitted photoAlli Rogers, along with the support of her stepmother Linda and father Bill, fights daily through her disease.

When the fluid fills in her chest cavity, Rogers has a procedure done where a needle is inserted between her ribs in order to draw out the fluid and relieve the pressure so she is able to breathe. Currently, she has had more than 100 of these procedures done.

Rogers said that because she was having the procedure done so often, her doctor inserted a Pluerx catheter so she can drain the fluid herself while at home.

"I was getting to the point where I couldn't breathe or walk over the weekend. This worked for me for a while," Rogers said. "Then it stopped."

Rogers' doctor found that her right lung had collapsed; her left lung was partially collapsed, but the fluid that remained inside had hardened, which allowed her left lung to only partially fall.

Upon her surgery, doctors found a softball-sized mass that was pushing against the collapsed long. They removed the mass and attached her lung to her chest wall.

"They attached my lung to the chest wall so no more fluid can get inside. That was in April, and it worked great, but recovery was horrible," Rogers said. "My breathing has improved a lot, and I can go for short walks."

After her surgery in April, Rogers faced kidney failure, a staph infection in her lung and blood infections that left her needing blood transfusions.

"It's non-curable. They told me I was about one in a million," Rogers said.

Rogers' stepmother Linda said that the doctors have told her that it is a genetic disease, but there is no one in the family who has had this illness.

"There's only a handful of people in the world that have this," Linda said.

In an effort to help their daughter, Linda, and Bill Rogers, in partnership with the Patty Pollatos Fund, have organized "Life for Alli," a benefit concert to be held at The Maryland Theatre on Sunday. The Baltimore Mandolin Orchestra featuring Beatrice Gilbert will be performing, with 100 percent of the proceeds going to the fund to benefit Rogers.

Rogers currently lives in Salisbury; her parents live in Mercersburg.

"Alli can't work and it's been difficult for her to make her daily bills, in addition to her numerous medical bills," Linda said.

The Rogers went through the board of directors at the theater for approval, because, Linda said, the theater does normally host charity events. The family is looking forward to a large number of attendees to help support their fight for their daughter's life.